Sara Ellis presents Patients Perspectives on Research Findings at the Patients Participate !Workshop at the British Library, 17th June 2011

1. Dr Sara Ellis
communications manager
Patient perspectives on research findings

2. AMRC
• Association of Medical Research Charities
established 1987
• We now represent 126 member charities
from heart disease, diabetes and cancer to
dementia, cystic fibrosis and motor neurone
disease
• Who we are
Our members are our trustees, a team of
eight people – covering research, peer
review, evaluation, policy, public affairs,
communications, finance, public involvement
and engagement
• What we do
Support our members to enable them to be
effective research funders

3. Our members
Medical research charities
today
• AMRC members funded
over £1 billion medical
and health research in
2010-11
• Our association
represents ~94% of all
available charity funding

4. Communication matters
• It's our mission
public benefit – research is what our members do
• Communication is a key ingredient in our relationship with the
public
• Supporters, patients, families – support us because we tell
them about the research we fund
online, social media, annual reviews, newsletters, campaigning,
media
• Most charities that fund research would like better lay
summaries
many employ people to write them
• Ipsos MORI public attitudes to science 2011
Public appetite for more – 4 in 10 hear about enough science, and 5
in 10 want more

5. It’s our natural ground
• Why do charities care about patient and public
involvement in research?
link between patients and scientists
• Explore how charities involve patients and the
public at all stages of their research cycle
setting research strategies – involvement in funding
decisions – communication and dissemination
• Led by our members
a learning set of 10 charities – experienced
champions to sceptical beginners – shared
experiences
• What we learned
it's difficult, cultural change, we're all different,
meaningful not tokenistic

6. How to get good lay summaries
The Stroke Association
• Lay members on research
awards committees
• Problem: lay summary
application forms
inaccurately reflecting the
project
• Solution: grant applicants
now complete a plain
English summary form
alongside a traditional
application form
• Structured questions

7. Involving patients in communication
Muscular Dystrophy Campaign 'It's very important that the charity
'Talk Research' works with supporters like me, looking
• Written by staff – challenging to at current research, putting it in lay
pitch at right level and identify terms and getting it out … to families
what mattered most to families who want to learn more'
• Talk Research – a research
communication focus group open
to anyone with an interest in
research
• Charity now writes for and with
the people who are affected by
muscle disease

8. ….getting your perspectives
Thank you
www.amrc.org.uk
http://twitter.com/amrc
s.ellis@amrc.org.uk